Today’s articles comes to us from Julia Germain of GLOBALHealthPR US Partner and Chair, Spectrum.

Support from the US, India and Spain

About aHUS

Atypical Hemolytic-Uremic Syndrome (aHUS) is an ultra-rare and life-threatening disease that can be acquired at any age. This condition causes blood clots to form in small vessels and block blood flow to the body’s major organs, leading to failure of the kidneys, heart and brain.

Support from GHPR Portugal

The Story Behind the Hashtag

Currently, there are 60 to 70 children and adults in Australia waiting to receive treatment for this deadly disease. And while the only treatment available and clinically proven to prevent premature death and organ damage is already funded in the US, Japan and several European countries, the Australian government has not yet made the drug available to patients through its federal Life Saving Drugs Program (LSDP). LSDP helps to cover the costs of drugs that treat rare diseases, and without funding through this program the drug Soliris would be unaffordable to all aHUS patients. The bottom line? If the Australian Federal Minister does not fund Soliris through the LSPD, aHUS patients will not have the life-saving drugs they need.

How You Can Help
The aHUS Patient Support Group 

Australia’s (aSPGA’s) “Plea for Life” campaign calls on patients, their families and advocates to post photos on social media of the hashtag #saveaHUSlives. The goal of the campaign is to capture the Australian government’s attention and ultimately get government funding for this drug.

GLOBALHealthPR partners, including Spectrum, are proud to lend their efforts to this important campaign. Join us in the conversation and swell of support, and snap your own photo to #saveaHUSlives!

You can also support this campaign by following the aPSGA on Facebook, Twitter, LinkedIn or YouTube and by using the saveaHUSlives hashtag.

Note: This article originally appeared in the Spectrum blog on 31 July, 2014.

The post Curious About the Hashtag #saveaHUSlives? Don’t Worry, We’ve Got You Covered. appeared first on GLOBALHealthPR.

Today we are teaming with the Epilepsy Foundation to release new research coinciding with Purple Day – a global, awareness raising initiative for epilepsy. Already today, the Epilepsy Foundation has raised $100,000 for this worthy cause, and is still counting!

New research released by the Epilepsy Foundation today reveals almost one-in-two Australian adults living with the country’s most common, chronic brain disorder are three-times more likely to experience abnormally high levels of anxiety compared to the general population.

Leading doctors, everyday heroes and The Amazing Race winner, Celebrity Apprentice runner-up and model, Nathan Jolliffe, 28, affected by the stigmatised neurological disorder, are joining forces today to highlight the role of anxiety and depression encountered by Australian adults living with epilepsy and the importance of spreading the word by donning purple.

According to new research author, Dr Chris Peterson from the Epilepsy Foundation, Melbourne, the new research highlights the significant threat posed by the stigma of epilepsy on a person’s mental health and wellbeing. “Our research shows the higher the level of exposure to the stigma surrounding epilepsy, the greater the increase in levels of anxiety and depression among those living with the disease.

“Factors that influence anxiety and depression levels in people with epilepsy include employment status, level of education, control of epilepsy, number of epilepsy medications and most importantly, stigma,” Dr Peterson said.

Professor Mark Cook, President of the Epilepsy Foundation and Director of Neurosciences at St Vincent’s Hospital, Melbourne, says the social consequences of the stigma faced by people with epilepsy are often worse than the disorder itself. “We haven’t seen attitudes change over centuries.”

Nathan Jolliffe, 28, Sydney, who had epilepsy as a child, acknowledges he was too embarrassed to reveal his condition to friends and didn’t want to deal with his epilepsy. “As a kid, you don’t want to feel different to anyone else. So I didn’t tell anyone about what I was going through. It can be intimidating to witness a seizure. Some people don’t know what to do in the event of a seizure, and that can be very confronting,” Nathan said.

Nathan says having his parents around during a seizure helped him immensely and stresses the importance of having support from those around you. “Seizures and epilepsy would be better perceived by the general public if we encouraged greater understanding and education.

“By relying on my great family support network and choosing to learn more about epilepsy, I’ve overcome some of the anxiety associated with the condition,” Nathan said.

So for Purple Day, why not don your best purple garment and show your support for people living with epilepsy and their families. And don’t forget to drop a dollar or two into the tin to support the cause, because every cent counts.

Named after the internationally recognised colour for epilepsy (lavender), March 26 is Purple Day – a day dedicated to spreading the word about epilepsy.

To learn more about Purple Day or epilepsy, contact the Epilepsy Foundation on 1300 852 853 or visit www.epinet.org.au.

The post Heightening Epilepsy Awareness on Purple Day appeared first on GLOBALHealthPR.

He challenged our group of leading, independent health-focused public relations firms to do more to advance the cause of rare diseases, and in particular, ultra-rare diseases.

In the U.S., a rare disease affects fewer than 200,000 persons, and an ultra-rare disease, fewer than 6,000.

David seemed happy to know that GLOBALHealthPR has already supported the location and identification of nearly 100 percent more children with Progeria, most definitely an ultra-rare disease in which children age rapidly. To date, about 110 children have been identified living with Progeria, an increase from 50 or so just five years ago. We titled our campaign “Find the other 150” because at the time, about 200 Progeria children were estimated worldwide.

A child with Progeria usually passes away from a heart ailment by age 13. The good news is that our client, the Progeria Research Foundation, initiated clinical trials several years ago, and published results in the past year demonstrating the effectiveness of a Farnesyltransferase inhibitors (FTIs) as a treatment for Progeria.

Alexion’s commitment to rare diseases, David explained, stems from the need for a collaborative approach to tackling rare and ultra-rare diseases. “Considering the majority of ultra-rare diseases are often the most life-threatening diseases seen in medicine, and commonly affect infants, children and young adults, we need much greater collaboration between government, industry and the general public in this exciting era in which science is unlocking breakthroughs,” said Mr. Kwasha.

2-1/2 Really “G’Days” Down Under!

For now, my thanks to the hosts of the AGM in Sydney, Kirsten Bruce, Paul Jans and VIVA! team members Josie Schwarzer, Joni Thomes, Ruby Archis, Mark Henderson and others. My Spectrum colleague, Andrew Bailey, and I appreciated VIVA!’s attention to detail in planning and conducting every aspect of the meeting. The VIVA! team seasoned each of our 2-1/2 days with just the right mix and dose of Aussie native and British colonial history, culture and business perspective. The VIVA! office is located in Mosman, a tidy, historic outcropping of former military base buildings on a hill overlooking Sydney. Well worth a visit to take in the sights and charms of their distinctive setting.

Thank you, VIVA! team. A rare pleasure for all of us to meet as your guests in Australia!

Uncommon Health PR Talent

This year’s Sydney meeting marked our 13^th consecutive annual meeting of GLOBALHealthPR partners. Looking around our meeting room at my peers, themselves owner/managers at leading PR firms in countries ranging from Singapore to Portugal to India to Argentina, I thought about what a privilege it is to know and work with successful business people like Paola de la Barreda of PR Partners in Mexico, and Kirsten Bruce, of our host firm VIVA!. These health communications strategists are truly at the top of their class. They understand better than anyone else – they’re at the helm of science-driven communications strategies, based on years of experience conducting successful pharma and other health industry PR campaigns in their respective countries. No one knows the Argentine health market better than Eugenia de la Fuente and her business partner at Paradigma PEL Communications Laura Torres. My friend and former boss from Hill and Knowlton and InterScience, Dr. Ken Rabin, now represents Poland-based Alfa Communications, making his home in Warsaw. Jorge Azevedo of Portugal partner Guess What was also in the house, and brought with him the latest news from the Iberian Peninsula and Mozambique, where Guess What opened an office last year. And Dinesh Chindarkar, partner at MediaMedic, is the unofficial but widely undisputed health social/digital media “wonk” in India.

Hearing each of our partners present his or her insights on what works and what doesn’t work in each market reminded me of how truly special our GLOBALHealthPR partnership is.

As I write this blog, I’m somewhere over western Australia, flying to Singapore for three days of client and prospect meetings with our partners in Singapore (who also journeyed to Sydney), Patsy Phay and Yap Boh Tiong, principals of Mileage Communications Group. Mileage’s footprint also includes Vietnam, Malaysia, Thailand, Indonesia, Myanmar and China.

I’ll file an update in a day or two. It’s my first time to Singapore, so stay tuned!

The post Realizing Rare Opportunities appeared first on GLOBALHealthPR.

Pink ball being used in a Mexican League game last month

Throughout the month of October, countries around the world joined together to raise awareness about the importance of routine screening and early diagnosis for breast cancer.

In Mexico, the PR Partners team led an awareness campaign called “Pink Victory” that successfully reached a sizeable percentage of the population.  The campaign was spurred by a joint effort between Pfizer, the Mexican Soccer Federation and Voit. The campaign consisted of all Mexican Soccer League games playing with a pink soccer ball. Additionally, in some cities, there were information booths and the opportunity to perform mammograms outside the stadium.

Since 1980, the mortality rate due to breast cancer has been on the rise in Mexico, surpassing that of cervical cancer deaths. Breast cancer is the second leading cause of death in women from 30 to 54 years old, and the leading cause of cancer deaths in women in general.¹

Rapid urbanization combined with changes in reproductive behavior and life styles² have resulted in the tendency for women to postpone the onset of motherhood, lower birth rates and decreased willingness to breastfeed. These tendencies, along with sedentary lifestyles, obesity, and poor nutrition, increase the risk of developing breast cancer.

Reducing risk factors and promoting early detection play an important role in controlling the disease and decreasing breast cancer’s mortality rate. There are three habits that could really make a huge difference:  self-examination, clinical examination and mammography.

Dr. Sandhya Pruthi, principal investigator at Mayo Clinic, recommends that women whose relatives were diagnosed with breast cancer have annual mammograms 10 years before the age that their relative was diagnosed. For instance, if the mother was diagnosed at 48 years old, the daughter should start at 38. She recommends that all women, even those without a family history of breast cancer, schedule their first mammogram by the time they turn forty.

The primary aim of our campaign is to educate women on the importance of these practices so that they become a habit in every Mexican woman’s life. The fight against breast cancer must be a permanent one, and must involve the cooperation of authorities, NGO’s, the medical community and media. PR Partners is proud to play a part in this collaboration.

References:

1. Dr. Gabriela Torres, Dr. Angelica Angeles, Dr. Eduardo Lazcano, Editorial. Breast cancer prevention culture population and professionalization of its detection and control. Public Health of Mexico Vol 53, no. 5, September-October 2011
2.  Julio Frenk, Editorial. Awareness, early detection and fighting prejudice. Key in the fight against breast cancer. Public Health of Mexico Vol 51, Supplement 2, 2009.

The post Mexico Sports Pink in October to Support Breast Cancer Awareness appeared first on GLOBALHealthPR.

Diabetes is a big problem in Brazil. The country has over 13.5 million people with type 2 diabetes and it is believed that half of those people are not aware of their condition. Brazil has the fourth-highest number of diabetics in the world, and this number is expected to increase exponentially.

Photos from the “Change your Values” campaign launch event in São Paulo, 2 September 2013.

With these numbers in mind, Tino developed the “Mude Seus Valores” (Change your Values) campaign for the Brazilian Diabetes Society. The campaign’s goal is to make sure this epidemic is controlled and that people are more aware of how they can prevent and treat diabetes in a more responsible way.

We understand that, today, health campaigns have to be broader, bolder and more present in social media than ever before. Engaging the audience through Facebook, Twitter, Yahoo Answers and other social media websites is essential to make sure patients are well informed to reach physicians.

Tino was responsible for gathering sponsors and developing the entire visual concept of this campaign, destined to capture the attention of the public. The idea is that with a couple of changes in your day to day life you can avoid diabetes, a chronic and serious illness.

The partnership with the Brazilian Diabetes Society will address two key issues. One is that we have to take action to change the future of this disease not only in Brazil, but all around the world. The other is the importance of a social media campaign to raise awareness of those problems and to engage individuals.

Leveraging social media to prevent chronic disease

A statement by the American Heart Association made in December last year, for example, recognized the importance of social media in helping children overcome obesity. It is undeniable that online communities have a bigger presence in our lives than ever before, specially to a new generation. Therefore, making sure the campaign is just as active online as it is in outdoor media is an important step to communicate with children and teenagers, to change unhealthy behaviors from the start.

According to the American Heart Association, creating an intervention for obese children in online communities helped them to find role models to change their habits.

The “Mude Seus Valores” campaign does precisely that. We invite people to take action, changing their lives step by step. We have to change our values after all.

In the coming weeks, please visit www.mudeseusvalores.com.br for more information on the launch of the “Mude Seus Valores” campaign.

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